Abstract Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.
The UK-REACH cohort was established to understand why ethnic minority healthcare workers (HCWs) are at risk of poorer outcomes from COVID-19 when compared with their White ethnic counterparts in the UK.Through study design, it contains a uniquely high percentage of participants from ethnic minority backgrounds about whom a wide range of qualitative and quantitative data have been collected.Organizations who recruited <10 participants have had their numbers masked to reduce the risk of participant identification.
Despite the growing importance of 'social value' as a central feature of research ethics, the term remains both conceptually vague and to a certain extent operationally rigid. And yet, perhaps because the rhetorical appeal of social value appears immediate and self-evident, the concept has not been put to rigorous investigation in terms of its definition, strength, function, and scope. In this article, we discuss how the anthropological concept of liminality can illuminate social value and differentiate and reconfigure its variegated approaches. Employing liminality as a heuristic encourages a reassessment of how we understand the mobilization of 'social value' in bioethics. We argue that social value as seen through the lens of liminality can provide greater clarity of its function and scope for health research. Building on calls to understand social value as a dynamic, rather than a static, concept, we emphasize the need to appraise social value iteratively throughout the entire research as something that transforms over multiple times and across multiple spaces occupied by a range of actors.
Since October 2012, certain family members of refugees seeking reunification through the United States Refugee Admissions Priority Three program must undergo DNA testing to prove they are genetically related. The putative purposes of the policy include fraud prevention, enhanced national security, and greater efficiency in refugee claims processing. Upon close inspection, however, the new policy generates significant sociopolitical and legal concerns. The notion of what constitutes a family is significantly narrowed. Required DNA testing may violate domestic laws and international human rights instruments regarding voluntary informed consent, privacy, and anti-discrimination. Traditional legal solutions insufficiently remedy these concerns and cannot prevent the collective march towards an intractable risk society that views the “Other” as a potential fraud. Alternative strategies to mitigate the impact of the new policy are recommended. Such strategies can allow for a more nuanced understanding of family and a firmer understanding of the inherent but also uncertain risks of DNA technology in the immigration and refugee context.
'%3e%3cpath fill='%23012169' d='M0 0v30h60V0z'/%3e%3cpath stroke='%23fff' stroke-width='6' d='m0 0 60 30m0-30L0 30'/%3e%3cpath stroke='%23C8102E' stroke-width='4' d='m0 0 60 30m0-30L0 30' clip-path='url(%23b)'/%3e%3cpath stroke='%23fff' stroke-width='10' d='M30 0v30M0 15h60'/%3e%3cpath stroke='%23C8102E' stroke-width='6' d='M30 0v30M0 15h60'/%3e%3c/g%3e%3c/svg%3e)
